ALMA MATER STUDIORUM – UNIVERSITÀ DI BOLOGNA
DOTTORATO DI RICERCA / PhD PROGRAMME IN:
Science, Technology, and Humanities
Ciclo XXIII
Settore scientifico-disciplinare di afferenza / Discipline: M-STO/05 / History of Science
Medicalizing Gender:
From Intersex to DSD,
From the Laboratory to Patient Groups
Keywords: Intersex, DSD, Medicalization, Hormones, Genes
PhD candidate: Daniela Crocetti
Coordinatore Dottorato
Relatore
Prof. Giuliano Pancaldi
Prof. Roberto Brigati
Prof. Marta Cavazza
Il tuo modo di “essere tra” toccava chi ti incontrava. Poiché quando si è rari non si è mai rari in una sola cosa, ma in tante, ogni tuo gesto, ogni tua parola, ogni tua azione, continueranno a vivere nell’altro.
A.B. referred to as Anna To AISIA
TABLE OF CONTENTS
ACKNOWLEDGMENTS... p. 7 INTRODUCTION... I.1. DSD as a Shifting Object... I.2. Syndrome and Syndromes... I.3. From the Laboratory to the Clinic: the Construction of Knowledge... I.4. Bioethical Concerns... I.5. A Note on Methods...
p. 9 p. 9 p. 11 p. 17 p. 20 p. 23 PART ONE: THEORY…... p. 28 1. TECHNOLOGY AND BIOLOGICAL CONSTRUCTION OF SEX... p. 32 1.1. Biological Theories of Sex, Finding the Locus of Identity... p. 32 1.2. Chromosomal sex and Molecular Variation... p. 36 1.3. Bi-sexual Gonads and Heterosexual Hormones... p. 47 1.4. Framing the Question, Contemporary Application of Biological Theories to the
Social... p. 56 2. HERMAPHRODITISM AND THE SOCIAL THREAT,
A WALK THROUGH HISTORY UP UNTIL THE 1900’S... ... ... p. 60 2.1. The Social Object... p. 60 2.2. The Medical Object, from the Sixteenth Century... p. 72 2.3. From Hermaphrodite to Pseudo-Hermaphrodite, Moving Inside the Body.
Nineteenth Century ... p. 79 2.4. Bologna Nineteenth Century... p. 85 3. INTERSEX AND MEDICALIZATION (1920-2005)...
3.1. Erasing Hermaphrodism, Phenotype and Genotype... 3.2. John Money and the Optimal Gender of Rearing...
p. 93 p. 93 p. 95 3.3. Money’s Evidence, Joan/John and the Rhetoric Around “Experimenting on
Children”... ... ... ... ... ... p. 98 3.4. From Biological Determinism to Social Determinism and Back Again... p. 105 3.5. Towards a Patient Centered Care Model, from Intersex to DSD... ... ... p. 110 PART TWO: PRACTICE
ITALIAN PATIENT GROUPS AND THE NEGOTIATION OF DEFINITION AND CARE, ENTERING IN THE FIELD... 4. AIS AND AISIA, SYNDROME AND SITUATION... 4.1. AIS, Technology and the Locus of Sex... 4.2. CAIS, Negotiating Diagnosis, Hospitals and Desires...
p. 117 p. 119 p. 120 p. 123 4.3. Not Talking About Surgery... ... ... ... p. 130 4.4. Towards Useful Medicalization, Gonads and Hormones... p. 135 4.5. Biosociality, Hidden in the Shadows and Out in the Light of Day... ... …... p. 141 5. KIO...
5.1. Klinefelter's Syndrome as a Multiple Object...
p. 145 p. 145
5.2. KIO, Biosociality... p. 152 5.3. Medicalization, Hormones, Gender and Health... ... ... p. 157 5.4. Prenatal Testing... p. 161 6. CAH... 6.1. What is CAH?... 6.2. Before Endocrinology... p. 165 p. 165 p. 167 6.3. Associazione Famiglie Iperplasia Surrenale Congenita... ...
6.4. CAH and Genital Surgery... ... ... ... .... 6.5. Overlapping Gender Identity and Sexual Orientation... ... .... 6.6. CAH and Reproductive Rights... ... ... ...
p. 176 p. 180 p. 191 p. 195 7. COLLABORATION, EVOLVING CARE IN THE ITALIAN CLINICAL
LANDSCAPE... 7.1. Shifting Landscape... ... ... 7.2. What was, what is. Shifts in practice from 2006 to 2010...
p. 201 p. 201 p. 204 7.3. 2010... ... ... ... ... ... ... ... ... p. 211 7.4. And Then There was Genetics, Practicing DSD Diagnosis...
7.5. Useful Medicalization... ... CONCLUSION... ... p. 214 p. 221 p. 223 BIBLIOGRAPHY... p. 228
Acknowledgments
This doctoral project started three years ago in the beginning of 2008. However, certain relationships, academic and non, started a few years earlier as I begun my Italian masters degree in Bologna.
I would like to thank with all my heart the people who have given me interviews, let me participate in meetings, and generally follow them around. In particular I would like to thank, in Italy, AISIA and Hospital A (that will continue to remain anonymous), as well as KIO, AFISC and the other patients and doctors I have encountered. In the USA I was given a lot to think about by Emi Koyama, as well receiving insight from Jane Goto and Thea Hillman.
My relationship with AISIA began before they were an official group and it has been a pleasure to see them grow. Due to the bittersweet nature of human existence, I became particularly close to one member, referred to as Anna, who died of heart complications at 38 in September 2010. She was truly an inspiration, funny and deliriously intelligent. I can’t quite believe she is gone.
I would also like to thank the professors who have mentored me since I joined CIS. It has been a wonderful experience. Giuliano Pancaldi provided a solid structure and much stimulation in the department seminars, as well as the other team members Anna Guagnini, Paola Govoni, Barbara Pecori and all of the other associated professors and of course the other doctoral students. I have to particularly thank Roberto Brigati and Marta Cavazza for the thorough reading and editing of my chapters, for both their historical and philosophical comments and corrections.
The STH doctorate at CIS also gave me the opportunity to study at the highly interesting research centers of EGENIS at Exeter and STSC at UCBerkeley. I would like to thank the entire team at EGENIS with particular thanks to Susan Kelly and Staffan Muller-Wille. At UCBerkeley, I would like to thank Cori Hayden for sponsoring me, and Eric Plemmons for his insights and help. I would also like to thank Katrina Karkazis for the conversation we had about DSD. Massimo Mazzotti who collaborated with CIS, formerly Exeter and now Berkeley, was a great help in forming my ideas about STS and how I wanted to approach the intersection of DSD and technology. I have been very fortunate not just to have had so many intriguing conversations with these scholars, but also receive their comments on my own work. Particularly inspiring was the Anton Dohrn summer school for the history of science at Ischia July 2009. I continue to think of conversation with the researchers and professors who
participated.
In fine, I would like to thank my mother for copy-editing, my partner for cooking and staying out of the room where I worked, and my friends for keeping Bologna interesting.
Introduction
MEDICALIZING GENDER
I.1 DSD as a shifting object
The subject of this research, the medicalization of the gendered body, is a shifting object. It has changed its medical name from Intersex to DSD (Disorders -or Divergence1- of Sex
Development) since the beginning of this research project. Loosely speaking it addresses the gendered components of the body, and their subsequent consideration. Drawing closer, it addresses how modern medicine treats people who manifest variations of one of the gendered components of the body, inserting their bodies into pathological categories now called DSD. This shifting terrain of different modes of viewing the gendered body has grown to include many variations, no longer solely interested in the mythical hermaphrodite. The locus of this investigation is in the interaction between these patient groups and doctors in Italy.
In 2006 medical terminology shifted from Intersex to DSD, erasing the eighteenth century category of pseudo-hermaphrodite. I intend to place the contemporary history of Intersex/DSD in Italy into the historical context of the medical disciplines that define and speak about these bodies as pathological. If DSD is a health issue and Intersex is an identity issue as the new terminology claims, the fields that will come to dominate DSD treatment will be endocrinology and genetics. We find ourselves still in the midlands of this development, where corrective surgery and psychological musings about gender identity are still prominent in the care models in clinical practice.
This research adheres to the interdisciplinary model of Science, Technology and Society, drawing specifically from the mentoring of scholars in anthropology, history of science and moral philosophy. One will find historical development, ethnographic enquiry and bioethical considerations throughout the course of the work. However, all of these considerations are influenced by one of the axes of STS investigation, intended as the interactional influences that science, technology and society mutually perform on each other. In this light, contemporary ethnographic investigation must be informed by a historical inquiry into the development of the scientific disciplines evoked, in this case in DSD treatment.
1 In chapter three we will further address this shift in terminology, including the Disorder/Divergence disagreement. Disorder is the official term implied in DSD, while patient groups and academics, including myself, support Divergence.
In specific I would like to examine how the linked use of genetic technology and clinical endocrinology have effected DSD treatment, starting from a historical view of the treatment of these disciplines. This exploration of the historical treatment looks beyond DSD to the construction of the molecular vision of gender, and the effects of said technologies on how we envision the gendered body. Adhering to the Foucaultian paradigm that new knowledge and technology creates new paradigms and possibilities of choice, the DSD pathological paradigm emerges anew within the confines of the molecular gender model.
This work is therefore divided into two parts, a historical section, and an ethnographic contemporary section. The first part contains three chapters, the first of which treats the development of hormonal and genetic investigations of the gendered body. The second chapter provides a long-term overview of biological gender categories up until the twentieth century, and the third chapter treats the developments of the twentieth century, including the shifting terminology from pseudo-hermaphrodite to Intersex to DSD.
Building on the foundation laid by the historical examination of the molecular gendered body, we arrive through ethnographical investigation at the contemporary experience of being diagnosed with one of the DSD syndromes. We will examine the evolution of treatment protocols in DSD treatment, paying attention to the multiple scope of the medicalization, from societal gendered issues, to molecular variation and the fabric of the body. The terrain of medical treatment will be drawn through the experiences of patient groups and their interactions with the doctors and institutions involved in DSD care in Italy.
The second section focuses on the three syndromes that have active patient groups in Italy, and their interaction with the Italian health system. The first chapter of the second section, chapter four, presents the most active group, AISIA (Associazione Italiana Sindrome di Insensibilità agli Androgeni), the closest representative of a pan-Intersex group. Chapters five and six present Klinefelter’s syndrome and Congenital Adrenal Hyperplasia (CAH). The seventh chapter treats the interactions of the groups with Italian medical institutions, with special treatment of AISIA’s negotiation with Hospital A.
The history of the medicalization of sex is riddled with ethical concerns, social beliefs and dynamics, and technological innovation. This complex web of history weaves itself around individual experience. The history and philosophy of science increasingly points to the need to examine the interaction of factors that lead to social practices. In these arenas that are so intricately woven into our life histories such as sex, gender, and the body the raging debate on authority of knowledge is constantly lurking.
I.2 Syndrome and syndromes
What is DSD? As we have already indicated, it is a multiple object, which considers the biological and social factors of the gendered body and outlines what is considered pathological versus normal. The syndromes within the category of DSD therefore manifest divergences in the development of one of the many components that are considered gendered in the body. The multiple nature of DSD surfaces not just in the juxtaposition of social and biological factors, but also in the numerous layers of biological factors, medical and scientific disciplines that are involved, and the ambiguous nature of how pathology is defined.
Anne-Marie Mol indicates that disciplinary boundaries inform their own research object, that is, how it is defined, manipulated and put into practice (Mol 2002). Mol refers to the discipline-specific practices as the ontology of the disease category. In her research on vascular leg disease, she found that different disciplines not only described and diagnosed differently, but also performed and manipulated the body differently.
For DSD it is no different: surgeons talk about diagnostic norms for the genitals from aesthetics to function; endocrinologists talk about hormone levels, glands and their genetic correspondents; gynecologists talk about reproductive organs and sexual function; genetic counselors talk about genetic markers and symptom probability; psychologists talk about psychosocial health and gender; patients and their families talk about treatment and consent; social scientists talk about medicalization of gender and physical variance, which now includes the role of technology in seeing and manipulating these categories. Obviously these are neither exhaustive nor closed categories, or paradigms.
Sometimes when I say, “I study Intersex syndromes.”, others respond, “Oh, you mean people who change gender”, referring to Transgender experiences. While Intersex and Trans issues are informed by similar theoretical considerations, surrounding norms of gender and the body, and the medical techniques used in treatment have run a parallel development course, they are far from similar experiences. Transgender individuals may choose to alter their physical make-up to greater conform to their idea of their desired gender presentation, reflecting some degree of individual choice. The unraveling thread in DSD treatment has been imposed choice, either through authority, lack of communication or lack of presentation of options.
DSD’s are generally called syndromes, not diseases, although this precision in terms is subtle enough to often be lost, leading to a discoursive interchangeability of syndrome and disease. It is the nature of syndromes to beg the discussion of pathological read as wrong,
versus pathology read as difference. Georges Canguilhem (1991) was one of the first to bring attention to the increased tendency in medicine to define illness by following statistical norms. These statistical norms were to provide that basis of the difference between the pathological and the normal, focusing on difference as the origin of illness instead of discomfort.
Canguilhem published in the wake of the Eugenics movement, which had specifically linked difference and illness to moral and social deviance (Davis 1997). Therefore when considering the difference in terminology between syndrome and disease, we must also consider the historical stigma that was associated with the term disease. In the genomic age we now debate the difference of syndrome and disease in relationship to identity (Rose 2006), and highlight the difference between having a syndrome and being diseased (or vice versa).
In medicine and psychology, a syndrome is the association of several clinically recognizable features, signs (observed by a physician), symptoms (reported by the patient), phenomena or characteristics that often occur together, so that the presence of one feature alerts the physician to the presence of the others. The term syndrome derives from its Greek roots (σύνδροµος) and means literally “run together”, as the features do. It is most often used to refer to the set of detectable characteristics, when the reason that they occur together (the pathophysiology of the syndrome) has not yet been discovered. A familiar syndrome name often continues to be used even after an underlying cause has been found, or when there are a number of different primary causes that all give rise to the same combination of symptoms and signs.
A disease, similarly, is an abnormal condition affecting the body of an organism. It is also construed to be a medical condition associated with specific symptoms and signs. It may be caused by external factors, such as infectious disease, or it may be caused by internal dysfunctions, such as autoimmune diseases. In humans, "disease" is often used more broadly to refer to any condition that causes pain, dysfunction, distress, social problems, and/or death to the person afflicted, or similar problems for those in contact with the person.
Therefore, in most disciplines, the concept of disease departs from the concept of syndrome based on two axes: the expression of pain and suffering by the patient (or family members in the case of mental illness) and the relationship of the biological variance to biological dysfunction. A syndrome may contain biological variances that do not specifically lead to dysfunction or suffering for the individual. However, this does not free the individual from the social stigma attached to differences in the body.
social rituals and norms that clean the social structure of all that might threaten it, from different bodies to different behavior. However, this anthropological insight also indicates how various cultures and time periods see different differences, marking some differences as dangers to be eradicated, disappeared or fixed, while other differences escape recognition. Bio-technology has given us new instruments to see differences in the body, re-framing the parameters of the pathological. One could argue, however, that the genomic era is pulling away from the negative definition of biological difference.
Ellen Feder brings these considerations of the normal body and the normal in society to that of the consideration of medical normalizing techniques in DSD treatment. Citing Foucault she addresses how in modern times “medical power is at the heart of the society of normalization” (Foucault in Feder 2009 pg. 231), therefore an institutional regulating body that also influences societal norms of the body. Foucault observes a transition in medicine from being “a set of techniques for curing ills and the knowledge they require.” (Foucault 1963 pg.34) to embracing “a knowledge of the healthy man, that is, a study of a non-sick man, and a definition of a model man” (Foucault 1979 pg. 182-3; Feder 2009).
Whereas Douglas and anthropologists might disagree that medicine was ever just a set of techniques used for curing, they would definitely agree that medicine has been used as regulatory tool to clean the social body. Feder indicates through Foucault’s argument, that DSD has become such an intense medical concern due to a historically located pathologization of anything related to sex, and specifically modern definitions of homosexuality. Feder discusses an aspect that is one of the key theses of this work, that the emphasis on the social gender aspects of DSD has, until recently, obscured treatment for other physiological issues.
The debate surrounding medicalization and normalization leads to a consideration of disability politics, which questions the social background of stigmatizing language used for physical differences. Disability politics also, however, addresses the difficulty of negotiating for desired medical techniques and against normalizing ones. Feder cites noted disability politic theorist Lennard Davis while writing,
Whether conspicuous or not, we must reckon with the fact that “there is no area of contemporary life in which some idea of a norm, mean, or average has not been calculated.” (Feder 2009 pg. 231; Davis 1995 pg. 23).
These parameters of the expectations of contemporary society regarding the body are part of the package within which DSD treatment lives. DSD syndromes disrupt the assumption
that ones biological sex will manifest not only in the matching gender identity, but the same genitalia and secondary sex characteristics. The fact that generally people associate one’s sex with the X and Y sex chromosomes is evidence of how quickly genetic knowledge has penetrated public debate about sex and gender. In western societies that allow for only two social/legal gender categories (male and female), the general modern trend has been to medicalize individuals diagnosed with DSD through surgical, and endocrinological intervention towards less ambiguous gender representation.
Contemporary DSD diagnoses are all based on a genetic definition of sex.
This is a brief outline of how the syndromes are medically broken down into syndrome, chromosome, gonads, hormones, reproductive duct development and genital appearance:
Chro moso mes Gonads Testo-sterone Dehydro- testo-sterone Wolffian ducts Mullerian ducts External genitalia 46, XY XY testes + + + - Male Klinefelter Syndrome
XXY testes +, low + + - Male
Small
XYY XYY testes + + + - male
46, XX XX Ovaries - - - + Female Turner Syndrome XO Streak - - - + Female Congenital Adrenal Hyperplasia XX ovaries + from adrenal gland +/- from adrenal gland - + ambiguous Complete Androgen Insensitivity Syndrome XY testes + but not responsive + but not responsive - - female Partial Androgen Insensitivity Syndrome XY testes + but not responsive + but not responsive +/- - ambiguous 5alpha- reductase XY testes + - + - Female/ ambiguous 17beta HSD XY testes + - + - Female/ ambiguous (Cohen-Kettenis and Pfafflin, 2003, pg. 23)
These charts are generally designed to outline the components of the gendered evoked in the syndromes definition, which facilitates gender assignment and treatment of gendered presentation. As you may observe, these charts rarely reference any of the physiological or
developmental issues that may arise in these syndromes.
The most common DSD diagnosises are (with available rough statistics for the USA): CAH (congenital adrenal hyperplasia) 1:13,000; AIS (androgen insensitivity syndrome) complete 1:13,000; partial 1:130,000; gonadal dysgenesis (which implies a mix of chromosomal material) 1:150,000; hypospadias (in which the urethra does not exit at the tip of the phallus or other variation) 1:700; XXY (Klinefelter syndrome, in which there is an additional sex chromosome) 1:1000; Rokitansky (vaginal or uterine agensis) 1:6,000; Turner’s syndrome (X,O, in which there is a missing sex chromosome) and 5-alpha reductase deficiency (Blackless, Fausto-Sterling, et Al.. 2000). There are other variances in chromosomal make-up or other gendered components of the body that either go unnoticed (without genetic testing) or until recently were thrown in other categories.
ISNA (the Intersex Society of North America) estimates that one or two in a thousand children received genital “normalizing” surgery from the 1950’s until recently2. However this
figure includes children with cloacal exstrophy (1:250,000, not considered a DSD), a condition with functional issues in which much of the abdominal organs (the bladder and intestines) are exposed. It often causes the splitting of both male and female genitalia (specifically, the penis and clitoris respectively), and the anus is occasionally sealed.
Individuals with both fully developed ovaries and testes may still be referred to with the older term hermaphrodite. Many find this term a relic of medical stigma. What most people diagnosed with DSD experience at some point in their lives, is being told their genitalia or hormone levels are inconsistent with their sex, or their chromosomes, and that this needs to be fixed, based on the language the doctor chooses. This is some of the information that can be found on the web site of the Italian Ministry of Health.
Le comuni manifestazioni delle anomalie di differenziazione sessuale che si manifestano in età neonatale sono
• ermafroditismo
• disgenesia gonadica mista • criptorchidismo/ipospadia
• pseudoermafroditismo (maschile e femminile) (Mattioli and Jasonni 2004)
As seen in this recent article by a research team from the University of Genoa, many terms refuse to die. Hermaphrodism and pseudo-hermaphrodism are more commonly described
respectively by the presence of partial or complete duel reproductive system, and the presence of a singular reproductive system that does not conform to the expected chromosomal sex. The same article reports the following statistics (unclear if they are from the Italian population):
Mosaicismo cromosomico 1/1,666 • S.di Klinefelter (XXY) 1/1,000 • S.da insensibilità androgenica 1/13,000
• S.da insensibilità androgenica parziale 1/130,000 • Classica iperplasia surrenalica congenita 1/13,000 • Agenesia vaginale 1/6,000
• Idiopatico 1/110,000
• Iatrogenico (farmacologico) Non valutabile • Deficenza 5-a-reduttasi Non valutabile • Disgenesia gonadica mista Non valutabile
Le forme più frequenti di anomalie dei genitali in pazienti con genotipo XY sono l’ipospadia ed il criptorchidismo con le quali vi è una relativa alta incidenza associativa con i genitali ambigui/Intersex. Questa elevata frequenza associativa rende l’esame obiettivo fondamentale per sospettare anomalie sessuali maggiori:
tipo di criptorchidismo incidenza di intersesso
unilaterali 30%
bilaterali 32%
palpabili 15%
non palpabili 50%
tipo di ipospadia incidenza di intersesso Anteriore 8%
Media 5%
One can already note the ambiguity of definition as to when to include hypospadias in the category of intersexuality. The conceptual change to DSD (disorders of sex development)3 in
some way neutralizes the emphasis on gender ambiguity, transferring the emphasis to norms of development, in a way that renders the inclusion of hypospadias and micro-phallus more “natural”.
The term Hermaphrodite historically refers to a person with both sets of reproductive organs but was also used to refer to people who were ambiguous or mixed in either the gender presentation or their genitalia. Pseudo-hermaphrodite was introduced in the 17th century as medical interest in defining biological sex grew. “True hermaphrodites” make up 0.007% of the population, but Intersex individuals or people diagnosed with DSD can make up 0.1% because the category has expanded to include many more forms of variation.
In western society hermaphrodism has conceptually moved from being a philosophical construct, a monstrosity associated with evil or danger, a biological anomaly representing social deviance, a physical disease category, to a set of syndromes representing biological variance. Yet consistently throughout the change in approach, the choice of the civic gender category has been considered one of the most pressing issues, not the functional aspects. The conceptual difference between disease and syndrome lends weight to policy decisions on the urgency of normalizing DSD bodies to conform to set standard of sex. Whereas a disease indicates a biological variance that necessarily disturbs the functioning of the organism, syndromes indicate simply the manifestation of this variance (especially on the symptomatic level) without implicating functional variation. The use of symptom terminology instead of disease terminology unveils the imperative to act medically on the manifest difference.
I.3 From the Laboratory to the clinic: the construction of knowledge
One salient issue in STS studies is the construction of knowledge, and the construction of authority in respect to said knowledge. Sociologists and Anthopologists such as Bruno Latour (1987; 2005), Michel Callon (1987), and John Law (1999) have advocated the Actor Network Theory (ANT) as a tool for analysis. This method tracks the web of communication from the site of investigation to the use of the information, as it becomes a “scientific fact”. We place “scientific fact” in quotations in order to highlight the aspect of the construction of information. Latour (1979) also argues that for an empirical event or application to be considered fact, the researcher must convince in some manner the social structures that will
use this information, that this information is useful and valid. Foucault in turn indicates that one of primary aspects of bio-power is how it delimitates the options of what is biologically “true” and therefore the possibilities for action.
For our purposes, the site of investigation is both the laboratory (hormonal, genetic and anatomic) and the clinic (patient data, surgical experience). The site of application is the clinic, which includes clinical laboratories. Throughout the course of this work, we will look at the history of ideas (Foucault 1969), as they are utilized in the laboratory and the clinic. The research institutions in question negotiate with the scientific community through publications and scientific conferences in order to convince their knowledge community that their ideas are valid. They negotiate with government institutions for funding and the possibility to implement new practices. But they also increasingly negotiate with patient groups regarding the establishment of correct terminology and care.
Mol’s emphasis on the ontology of medical knowledge highlights another aspect of the construction of the scientific fact; practice. Medicine has the express purpose of translating biological data into practices, which should favor the life and experience of the organism. A scientific fact is translated into a social fact, given meaning through its insertion into a practice. The density of a hydrogen molecule has social meaning that is expressed by how we utilize this information. The “reality” of the physical world is irrelevant for humanity until we have tools to talk about it, visualize it or utilize it. The construction of “scientific facts” is a translation of the observable into a language we can understand and utilize. The translation of an empirical phenomenon, in fact, usually happens through a related practice and tool set. Each discipline in science and medicine adapts a set of practices that privilege certain investigational tools over others and certain scientific facts over others (Daston 2000).
DSD diagnosis and treatment involves several knowledge sets and visualization technologies. As we will see in chapter one, descriptive models developed in research laboratories are adapted to practices in the clinic. The knowledge set from a lab that researches hormones are translated to fit the needs and the social environment of the clinician. The commercial adaptation of certain hormonal therapies such as those used for birth control has lead to the use of that type of hormonal compounds for many different situations, including DSD.
The first section of this work focuses on the progression of the dominant scientific beliefs about the gendered body up into the twentieth century. A more detailed historical work would indicate the other currents of scientific thought that were contemporary to each phase, that fell into disfavor, or were less widely accepted. Unfortunately we have space only to consider the
theories that have lead to what is currently considered scientifically true. Historian Simon Schaffer (1986) indicates that history is usually a history of the winners, and therefore of the scientific theories that came to be considered fact.
I have tried in chapter two (of the first part) to construct a progression of the main scientific theories of the gendered body that have lead to the current paradigm. One must consider that this history reflects primarily canonic and academic reflections on the gendered body, not popular belief. As we will see in chapter two, doctors often saw “hermaphroditic” patients posthumously, and express surprise and dismay that these “differences” were not noted in life. This gives us little information onto the lived experience of these individuals, and how their society or microcosm viewed (or perhaps didn’t see) their biological variance.
A society indicates its points of contention by creating rules and structures to govern them, as Adriana Destro (2005) notes in her anthropological analysis of the Talmud. While Destro is primarily addressing the length of the text referring to menstrual regulation, she indicates that commonly accepted social practices might not have been included in the list of social regulations, because without conflict these points become invisible, without need for comment. We may ask ourselves about the silence of popular commentary on the hermaphroditic body throughout history, and if this might indicate that specialists, and not the general population, primarily noted these physical variations. If this is true, then the premises that DSD bodies create social stigma, and therefore need to be “fixed”, is in part contemporarily medically constructed. Instead of constructed we could say exacerbated: there are certainly observations of social stigma against Intersex individuals in non-medicalized contexts, such as in the eastern African Pokot tribe4. We have relatively little personal record
of people who might have had DSD syndromes outside of the medical description up until the twentieth century. Histories outside of the medical context appear primarily when sexual orientation is the focus of contention.
The second part draws away from a purely scientific perspective and investigates three syndromes directly, followed by an examination of the interactions of patient groups and medical institutions. These ethnographies paste together medical knowledge with tacit knowledge, the experience of the people diagnosed. What emerges is a contemporary aspect
4 Edgerton’s (1964) research indicates that in this African context an intersex person is excluded from the socially acceptable sexual sphere, and from the dual gender system, thereby highlighting social stigma in non-medicalized arenas. However scholars such as Ong and Peletz (1995) question the influence on colonial structures in the creation of a global construct of gender norms.
of the construction of knowledge, the practices of the people outside of the traditional boundaries of institutional knowledge and authority.
Steven Epstein states:
In recent years, as questions of health and illness have been recast as thoroughly political matters, more and more ordinary citizens, often organized into patient advocacy groups or broader social movemnts, have demanded a say in how scientist and health professionals go about their work, tossing aside the presumption that technical matters are best left to the experts (Epstein 2007).
Italian patient groups are identified as experts to some extent, analyzing the cutting edge of scientific production on their syndrome, comparing it to actual clinical practice and then adding their own tacit knowledge that comes from living daily with DSD. Some people arrive well into adulthood before discovering the syndrome. This has caused patient groups to question the nature of the medical emergency.
To question the nature of the medical emergency is to question the development of scientific beliefs surrounding DSD and the gendered body. In the first section of this work I hope to unravel the practices that lead to the current treatment paradigm, from the lab to the clinic to the patient.
I.4 Bioethical concerns
DSD treatment has come out of the dark, becoming a bioethical issue since the 1990’s. This is due to the rise of bioethics as a discipline, and the actions of the first DSD patient group, ISNA. In 2010 the Italian National Bioethics Committee (Comitato Nazionale per la Bioetica/CNB) treated the issue, offering an official position on DSD treatment in both Italian and English.
It is a delicate matter of considerable bioethical and bio-juridical interest as it places at the centre of reflection the sexual identity of the child (the different physical, mental and social components), the complex decisions of intervening on the body and psyche by the physician, the manner of providing advice for parents and the children themselves when they reach a sufficient level of awareness, the personal, social and legal implications for those affected by these pathologies.
The Opinion, after placing the problem within historical and clinical framework, highlights the principle elements of international bioethical guidelines, in order to grasp the problematic issues in bioethical and juridic terms, and reach some important shared recommendations. Including: each medical intervention in DSD cases must have the objective to harmonize elements of disharmony
in physical, psychological and social terms; the physician must pay particular attention on a diagnostic level to each objective sign (from the stage of prenatal development) to prearrange any possible therapeutic instrument; any intervention on the body must be guided by the principle of the best interest of the child, avoiding any unnecessary mutilation (such intervention should be implemented only in emergencies, as it is preferable to wait until the individual reaches a maturity which allows the expression of consent); the family and the child himself/herself (if able to understand) should be given adequate psychological support and the communication must be careful and gradual, with the provision of appropriate counseling.5
The CNB’s position focuses on three key internationally recognized issues, correct diagnosis, full informed consent, and the complex nature of surgical intervention and the “best interest of the child”. However two crucial points are left to some extent to interpretation; how one harmonizes the physical, psychological and the social terms, and what are the guidelines for acting in the best interest of the child? Until recently, following the model of John Money, it was considered in the best interest of the child to conceal everything and operate early so that they would “not remember anything”.
“The best interest of the child” has been a controversial issue within bioethics due to the individual juridic vacancy filled by the child’s legal guardian, often a fretful parent. To this respect the Hastings Center commissioned a collaborative research that resulted in the 2006 book, Surgically Shaping Children. This research focused on the different arenas of genital surgeries for DSD, cleft palate and limb lengthening surgeries. It grew out of a project that addressed enhancement technologies, which soon came to realize the fuzzy line between enhancement technologies and corrective surgeries. This fuzzy line is the statistical or contemporary social and medical norm of the body.
We weren’t talking about advantage-seeking social climbers. Instead we were talking about parents and children, who hoped a more normal appearance would improve psychosocial functioning…it forced me and the working group to face one of the deep tensions at the root of many if not all of the debates regarding what we might call “self-shaping technologies.” Parents have two fundamental obligations. One is to let their children be, to let them unfold according to their own desires and capacities. The other parental obligation is to shape children, to promote their flourishing or psychosocial functioning (Parens 2006 pg xiv).
5 Italian National Bioethics Committee, 25 Feb 2010, Minor’s Sexual Differentiation Disorders: Bioethical Aspects pg. 3; http://www.governo.it/bioetica/eng/opinions.html; Italian http://www.governo.it/bioetica/pareri.html
Through the comparison of the opinions on the differing techniques, not only of doctors, but also of patients and parents, a common picture emerges. Parents feel a lot of pressure from their social environment and the doctors they encounter to give their children the tools to be not only normal, but also competitive. Rarely did someone speak out against cleft palate interventions, due to the low risk and the relationship of facial aesthetics to social interactions. However, what emerged was that generally the self-esteem of the child was damaged if they were not involved in the decision making process, that being “fixed” left a lingering identity of “not good enough”.
Even in the case of cleft palate, a child does not identify their physical difference as social significant until it is indicated to them. Cassandra Aspinall relates how she came to the awareness of her difference as her grandmother tried to explain to her that it was OK.
Though her grandmother was worried about the harmful and wrongful reaction of others, Aspinall got the impression that something was wrong with her…What are the costs to the child when the surgery’s primary purpose is not to make the child feel better, but to make others feel better about the child (Parens 2006 pg xvii)?
As we will see in the ethnographic sections, there are many emotional complications in having irreversible decisions made for you that shape your body. Informed consent is a concept that is applied to able-minded adults, not children, therefore the bio-ethical concern becomes predictive, what will be the best interests of the future adult? Though ambiguous in their wording, “avoiding any unnecessary mutilation”, the CNB cites the Columbia court ruling that dictates that parents cannot choose genital surgeries for their children as they do not represent functional emergencies. In this ruling the age of consent for surgical procedures is lowered to an elastic age around puberty in which the child can be involved in the decision making process.
Informed consent itself is a sticky issue, due to the problems in construction of knowledge and authority over knowledge addressed earlier. Doctors propose techniques and therapies, addressing DSD as a medical emergency (that implies functional problems) rarely counseling the family that they can wait, or decide not to intervene at all. The Hasting’s center project, instead, arrives at a similar message as ISNA’s patient centered care model:
If children with atypical bodies are assured of their caretakers’ unconditional love, if those children understand the facts about their bodies, and if, whenever possible, they are included in decisions about the treatment of their own bodies, they will be fine (Parens 2006 pg. xvii).
pre-natal genetic testing. If an individual is given all of the information about a syndrome, not just stigmatizing stereotypes, they will be prepared to make an educated choice about risk possibility, instead of being advised to end a pregnancy with a “genetically diseased child”. As we will see in chapter seven, informed consent changes across disciplinary lines, because the informational object itself changes as technology changes.
The CNB’s guidelines indicate the arrival of bioethical consideration of DSD in Italy. However, these guidelines have no real legal weight and are affected by a similar academic affliction found in many Italian disciplines: almost all of the textual research cited is foreign, and no Italian doctors or patient groups were consulted. It is possible that due to the lack of literature on DSD in Italian, this document will gain persuasive weight in coming years.
The patient group’s themselves have led the direction of the attention that we will pay to certain bio-ethical concerns over others. While irreversible childhood surgery (often performed without informed consent) was the first bio-ethical concern to put Intersex on the map, it is not always the main focus point of Italian DSD groups. The Italian DSD groups, either because they are syndrome oriented and not pan-intersex, or because they are less confrontational about the demands of social conformity6, focus less on the ethics of “corrective” genital surgery and more on total body health problems.
At the beginning of my ethnographic research, at the end of a long discussion, American Intersex Activist Emi Koyama reminded me that Intersex syndromes can cause health problems due to endocrine variances. Koyama indicated that these health concerns are often overlooked due to the morbid focus of medicalizing genitals. These comments and the orientation of the Italian patient groups lead me to focus more on endocrinology and genetics, instead of surgical procedure. The ethical quandary of “surgically shaping children” remains an open chapter in Italian DSD care. However, as we will see, particularly in chapter seven, full body care that includes the endocrinological and genetic developments discussed in chapter one, is increasingly being put into action.
I.5 A note on methods
Due to the interdisciplinary nature of both STS as a discipline and DSD as a medical object, there have been several academic theories and methods utilized in this research. On a broad level these methods were historical and ethnographic, yet as we have touched upon
6 The severity of the Italian “gaze” as a form of enforcement of social norms of presentation was noted in popular literature at the turn of the century (Dalton 1909)
earlier, both of these aspects are influenced by an STS perspective that would like to investigate the creation of knowledge.
The historical research, therefore, becomes a dance between primary and secondary sources. STS and Anthropology often rely on secondary sources that already have a layer of theory applied to them for historical information. In order to create a broad picture of both laboratory research on the gendered body and a historical picture of DSD, I have greatly relied on the research of others. However, observations from my advisors from the history of science quickly indicated certain discrepancies between the generalized pictures painted by theoretical secondary sources as opposed to the detailed work of historians.
This discrepancy is most notable in respect to theories regarding the progression of thought surrounding the gendered body, and Laqueur’s (1990) one sex/two sex model. In order to circumnavigate this theoretical debate, it was necessary to yet again, primarily address the history of “winners” in research arenas. The picture that emerges focuses on the history of ideas about gendered components of the body, and gender in society, but not a conclusion to the debate about gendered bodies in society.
Secondary sources represent the first and third layer of the historical components of this project. The first layer addresses the evolution and separation of the gendered body into components, causes and social theory. Through this separation of components the gendered body becomes infinite, composed throughout history of many diverging theories and even designs on what lays inside of us. The primary research of others is invaluable in creating a picture that leads to our contemporary complex molecular theories.
These secondary sources highlighted the shift to an internal visualization of the body and how that relates (or doesn’t) to contemporary DSD care and conception. This influenced the emphasis on endocrinology and genetics in our first chapter.
The second level of the historical research focused on primary sources, some indicated in the secondary sources. The work in the first and second chapter indicates this dance back and forth between secondary and primary sources. The third chapter, instead, contains research with primary sources that have little support with secondary sources. The work on Taruffi and other Italian anatomists grew out of the desire to contextualize the Italian medical academic development. These primary sources are generally published work, although letters help construct some of the background of the medical figures, that might not emerge in these pages.
The other concentration of primary sources appears in the ethnographical section. I had tried to indicate when medical data and research is international or Italian production. While
this work addresses DSD in an Italian context, it proposes no broad theories about how Italian society might specifically view biological gender difference. Italian contemporary medical practice acts primarily in the international bio-medical arena, erasing any context specific aspects in Italian medical publication, which is often in English. Even the historical work of Taruffi indicates a strong dialogue with the European medical community. In certain cases, what emerges is the timing and placement of certain discussions, such as either the recent inclusion of DSD in some Italian pediatric textbooks, or the concentration of recent Italian medical research papers on physiological issues as opposed to gender assignment. However doctors and patients alike informally wonder if the Italian gender and familial structure lends itself in theory to the reconstructive surgical model. One can find very differentiated gender stereotypes in Italian media (Zecchini 2005) and an emphasis on conformity in familial structure.
The overlap of ethnography and history in STS has led to much debate on how to treat all this information together, and specially how to analyze it without imposing an artificial constructionist model. Thomas Kuhn (1962) was of the first to popularize the idea that scientists are not objective regarding their own research, and that this subjectivity is relevant to the history of science. In addition to this he addresses what he calls scientific revolutions, or the changing of paradigms that open space for new ways of thinking and working with a problem. The shift to a molecular model of the body is certainly one of these grand paradigm changes.
Bruno Latour, Micheal Callon and John Law developed the Actor Network Theory as a model for analyzing how these paradigm shifts come about. ANT proposes an analysis of how scientist/doctors/patients/actors negotiate with institutions/social networks in order to transform their observations and opinions into scientific facts. Sociology and Anthropology of Medicine adopt a version called Situational Analysis (Clarke 2005) that maps the interactions between actors in the creation of meaning in a given context. Situational Analysis adds a representative tool to ANT, in which symbolic maps are drawn as part of the research process that visually indicate the power and significance of the actors and networks involved.
In this project the Actors are doctors (from multiple disciples), patients (representing different syndromes) and laboratory researchers (from anatomists to molecular genetists). The Networks are professional conferences and associations, governmental regulatory structures, and ever increasingly, the Internet. The first part of this work concentrates on the transformation of laboratory research into clinical practice. The second part addresses the entrance of a new subjectivity into medicine, the negotiational power of the patient.
The ethnographic component of this doctoral thesis is primarily qualitative, in that manner following an anthropological model more than a sociological one. The research period spans from 2006 to 2010 and consists of participant observation, in-depth interviews, focus group interviews, and internet forums from both patients and medical professionals. All of the names have been changed or are left as initials.
The participant observation has had two aspects, the extended period and a concentrated period, both in Italy. Through the entire research period, I attended medical conferences, medical lectures and meetings on DSD (n=9), as well as the meetings of AISIA (n=8). From Jan 2010 to July 2010, I frequented the molecular genetic lab of Hospital A, with occasional encounters with other members of the DSD team.
After much debate about how to protect the privacy of, not just, the patients I interviewed, but also the doctors and the institutions, I have coded the hospitals that I have interacted with A, B, C, D, E, F. The more in-depth research was performed at Hospital A. I adapt Anne-Marie Mol’s explanation in the preface of The Body Multiple (2002), that the practices of Hospital A are neither exemplary nor unique to the Italian context. However, seeing as Hospital A seeks to represent itself as a primary DSD center, it is a good model.
By starting from such a well circumscribed site, I try to move philosophy away from formats that carry universalistic pretensions, but that in fact hide the locality to which they pertain. However, the idea is not to celebrate localism instead of universalism. Instead, it is to keep track as persistently as possible of what it is that alters when matters, terms, and aims travel from one place to another (Mol 2002 pg. viii).
Mol raises another of the many issues at the heart of this research: how important is it to punctualize the cultural context? I have followed Mol’s model also with regards to this issue, hoping to let practice reveal what might be interesting about contextual specificity such as cultural influences without elaborating cultural specificity as the object itself. Like her, I write in English for the purpose of communicating to a larger academic community. English, however, is my native language, while not the language in which I have lived my life for the last seven years.
Most of the interviews were conducted in Italian (apart from the handful in the USA) and both quotations and translations have remained faithful to the actual words said or written. The quotations have been checked for minor grammatical errors that might have occurred in transcription. The in-depth interviews cover the entire research period and have been repeated with the same people over time, with patients (people n=17, interviews n=33) and medical
practitioners (people n=12, interviews n=20). From 2008 to 2010 there were 4 occasions in which part of the AISIA meetings involved a focus group interview session.
The Internet is the primary home to many of the patient groups. It also provides a rich ethnographic resource that is, however, questionably reliable. I have cited forum discussions primarily when they express a commonly repeated sentiment in the group. I more liberally site information or stories from the group websites when it is clearly indicated that these statements are part of the official presentation of the patient group or hospital team.
DSD treatment in Italy seems to be changing rapidly, if not only in regards to full disclosure of diagnosis. This work hopes to capture this fleeting moment between the paradigm of treatment formed in the 1950s, which is informed by centuries of research and philosophy of gender and the body, and the treatment model to come.
Part One
THEORY
DSD (Disorders/Divergences of Sex Development) is a composite object that has been constructed over time through the mutation of scientific disciplines and attitudes surrounding the body and gender. DSD currently exists in a social reality full of overlapping contradictions, as in any historical time period. We search for biological causes for social dynamics, such as behavior, and social explanations for biological phenomena such as the moment death occurs, while rarely suggesting theories that interweave both logics. Bruno Latour suggests we have never achieved the pure separation of categories we believe to be part of the modern logical process, such as the Cartesian mind body split and other black and white categories (Latour, 1993). Latour hypothesizes we have never been modern, continuing to contaminate “pure” categories such as the mind with physical processes (the body), the natural with the social, science with culture as so forth.
The biological theories that address the gendered body often claim to be “pure” science or to “just” address the phenomenon of physical processes, however this is categorically impossible. The twentieth century has sought to dismantle the idea of the “pure” scientist who lives in hermetically sealed box, deaf to the messy problems of social theories and debates. Historians and social theorists have pulled apart this image piece by piece, inserting science in a social context and treating science as the process in which observations are translated into theories and objects permeated with social significance. Scientific facts are brought back to the realm of social performance and expectations.
Anne-Marie Mol draws attention to this dynamic by addressing medical practice, describing the doctor-patient interface, but also the interaction between doctors and machines, doctors and the body, doctors and explanatory models. In particular Mol draws our attention to how the scientific object shifts from site to site throughout the body, acquiring symbolic significance and losing it again, even when discussing the same syndrome category, based on the discipline of the observer. A syndrome can be described by means of a genetic marker, a hormonal level, a physical difference or an impairment to how one’s life expectations.
It is precisely when the scientific object must be put into action, made to do something in and for human society, that it is revealed to be a symbolic signifier much like any cultural artifice. The processes endocrinology describe in the body, for instance, do not lose their
relation to the real, physical world, what science describes is certainly easy to document. However, when a hormonal theory is applied to a cure, or even the description of a developmental process, it steps into the realm of social interaction and symbolic meaning.
This first section presents a theoretical look at DSD, seeking to display some of the explanatory models that make up the current terminology. The second section turns to the human experience, attempting to look at the syndrome categories from the perspective of those diagnosed and thrown into the world of hospitals, doctors and scientific theory. Both sections are in themselves informed by many theories and perspectives. The primary disciplinary slant is that of STS (Science, Technology and Society studies), that aims to analyze the social, cultural and political factors that contribute to the creation of scientific facts and data.
STS is inherently interdisciplinary and is itself informed by certain principals found in anthropology and history which shatter the nature/culture explanatory divide. Since the arise of increased technology that can “visualize” the inside of the body and its intimate molecular components such as chromosomes and genes, there has been a flood of research that claims to have found a biological explanation for complex social behaviors, including gendered behaviors. At this point the anthropologist often steps up and says, “But that’s impossible; behavior is culturally constructed.” However, people began to be nervous about turning everything into a culturally-constructed phenomena, pointing out that, even historically, there have been tendencies for humans to behave in certain ways. Human reality is embodied, influenced by experience mediated by the body, including similarities and difference with other bodies.
Marcel Mauss discussed body techniques, ways in which we create symbolic meaning through our bodies and embodied actions. Mauss wrote of physical activities that are coded as female activities or male activities, based on the cultural significance of said activities, regardless of actual individual physical attributes that might make one better at any given activity. Anthropologists have documented how for instance childrearing activities are gendered differently from temporal culture to temporal culture. Mauss' considerations of body techniques turned in another direction as well, to consider how the morphology of the body effects individual experience. From this perspective we can begin to also look at biological theories surrounding the gendered body, that imply experiential differences based on a biological precedent.
The twentieth century has seen the separation of sex and gender, separated at the hip in order to create ways to talk about the practical aspects of living in a gendered body in any
given society (Butler 1993). Sex has come to refer to biological objects such as genes and hormones, and gender to social aspects such as identity and behavior (Fausto-Sterling 1985; 1993). The word gender has given us an important tool to think about what was assumed to be natural or embedded in the body. We have come a long way from the end of the nineteenth century when anatomists claimed that women and certain races were naturally inferior to European men based on their brain size and other biological components (Reis, 2009).
Gender has given us a way to address disparity and prejudices by removing them from the body and placing them in the realm of social interaction where they best belong. However, this has often allowed the biological “facts” of sex to remain black boxes, un-scrutinized, accepted as they are. I would propose that the biological “facts” of the gendered body are involved in a circle game where embodiment helps create ideas about gender, and ideas about gender also help create what we think about the material of the body itself.
Sex as a biological compound object is informed by a legacy of laboratory research on each of the individual aspects that are considered related to the reproductive system, from gonads to hormones, but also performative aspects of gender roles. The biological object of, say, the gonads, is translated from its empirical components to a participatory member in the sexual system of the body, where it gains symbolic meaning informed by the social demands on the gendered body.
In the first introductory chapter we addressed not only research methods, but many of the practical and theoretical concerns surrounding DSD. In the second chapter we will be looking at what the biological vision of the gendered body is. The gendered body is parceled out into chromosomes, genes, gonads, ducts, genitals, hormones, hormonal receptors, secondary sex characteristics and the murky arena of the brain and behavior. In order to address contemporary methods in DSD treatment we will look in further depth at endocrinology, anatomy and genetics, in an attempt to address the shifting locus of biological sex. We will try to mainly address the construction of biological sex, however social theories about gender role and behavior invariably enter the scientific picture.
In the third chapter we will fill in some of the background story of the historical mutation of not only the gendered body, but the then-called hermaphroditic body. Addressing primarily the western world, we will quickly follow the shifts in perspectives regarding the gendered body, arriving at the contemporary medicalized discourse that delimits the normal and pathological. The fourth chapter addresses the interventionist methods of the twentieth century, and the creation of Intersexuality. In this period from the 1920s to the present, attempts are made to create a uniform medical protocol to treat differences in the gendered
body. Towards the end of the twentieth century, the patients voice is finally heard, creating the space for much needed reflection on the medicalization of the gendered body. The fifth and final chapter of this first part brings us to current terminology and treatment methods of DSD. In this chapter, we will discuss the relevance of terminology in light of the historical changes the category has undergone.
The second part of this thesis addresses several aspects of what Nikolas Rose (2006) and Paul Rabinow (1999) propose as bio-sociality. While directly referring to social mechanisms organized around biological objects such as syndromes or genetic markers, it also addresses the interaction between technology and experience of the body. Visualizing bio-technologies makes us aware of genetic markers and “potential” illnesses (Rose and Novas, 2000), as well as increased levels of biological variation. By shifting the attention to the individual who is transformed into patient, we are witness to the struggle for authority in treatment and syndrome definition. The origins of this struggle are contained in Kleinman's analysis of Disease and Illness, disease being the bio-medical explanatory model, and illness consisting of the individual experience of sufferance. However, despite cries that the masses are not scientifically literate, recent history has seen the rise of patient movements that struggle for legitimacy, utilizing scientific language and research. The second part, therefore, follows the interaction of patients and doctors in the establishment of scientific meaning and care protocol.
Chapter 1
TECHNOLOGY AND BIOLOGICAL CONSTRUCTION OF SEX
1.1 Biological theories of sex, and the search for the locus of identity
The examination of the passageways that transform laboratory investigation into scientific fact is one of the considerations central to STS. In this chapter we will look at the historical formation of some of the biological arguments central to DSD treatment. DSD treatment is primarily informed by theories of biological sex differentiation, which in the twentieth century are increasingly informed by the biological disciplines of genetics, endocrinology and embryology. DSD treatment is also informed by an overlapping of biological theories onto social theories, such as hormonal imprinting, that investigate how biological factors might contribute to social practices such as identity formation and behavior.
Therefore, before we look at DSD treatment and the clinic, we will look at the laboratory and consider how research questions are framed. We have come a long way from the end of the nineteenth century, and the scientific claims of the biological inferiority of women and certain races (Reis, 2009). However, the assumption that there are binary biological differences underlining the categories of man and woman still inform research questions in different branches of biological research disciplines. On one hand this contributes to a naturalization of social gender differences, on the other, this contributes to the gendering of biological components that participate in the formation of the gendered body.
The twentieth century has encouraged the conceptual and practical separation of the terms, sex and gender, so as to have better tools to address what are considered biological factors versus social factors. The biological construction of sex has delved deeper into the body, beyond the mere genitals, to expose not only reproductive organs and gonads, but molecular components such as hormones, chromosomes and genes. Since the scientific “discovery” of the sex chromosomes, XY and XX have become quickly adopted as canonic markers of biological sex, while at the same time it has been conceded that biological sex does not produce uniform gender identity or gender behavior. However, it must be also conceded that chromosomal sex does not produce uniform biological sex. The premise is that sex as a binary notion is a factor of the social interpretation of the reproductive system. In this chapter we will be looking at some of the components of the biological construction of sex, such as hormones and molecular genetics.
